Tuesday, August 31, 2010
What a Roller Coaster!
Since June 7th our life has turned into a roller coaster of emotions and unknowns. Last Thursday Addison went in and her CBC showed less than OK counts which had Charles and I both in a panic. After a weekend full of worrying, tears and praying we met with Addison's hematologist Monday morning and to our great surprise Addison's counts were back up to where they had been the past 5 weeks. This means no transfusions or treatment for now!
WBC 3.85
Neutraphil 1.16
HGB 10.9
Platelets 47
The Dr informed us that when someone has mild aplastic anemia their counts can stabilize and then have these random "blips" down but recover back up quickly. They could be due to fighting off a small cold/infection or her bone marrow just needing to rest for a bit since it is working in overdrive. She was initially worried Friday because there should not be a significant drop in the HGB just WBC and platelets. We concluded the drop in the HGB was mainly due to her being extremely hydrated. Your hemaglobin is a concentration of your red blood so if you are super hydrated the concentration could be diluted. We remembered that the day before Addison had the CBC last week she drank a record amount of fluids so that could account for the low HGB. Well on Sunday Addison barely drank anything and then again Monday morning so her HGB was back up. Crazy how little things like that can affect it in such a huge way! The Dr did say that if Addison continues to improve it will be a slow upward trend that will take probably close to a year or longer before back to normal levels. We are happy to wait and avoid treatment! Just means our life will continue to be a roller coaster for quite some time!
Going to work on getting some pics posted of our little lovebug! Thank you for the continued prayers!
WBC 3.85
Neutraphil 1.16
HGB 10.9
Platelets 47
The Dr informed us that when someone has mild aplastic anemia their counts can stabilize and then have these random "blips" down but recover back up quickly. They could be due to fighting off a small cold/infection or her bone marrow just needing to rest for a bit since it is working in overdrive. She was initially worried Friday because there should not be a significant drop in the HGB just WBC and platelets. We concluded the drop in the HGB was mainly due to her being extremely hydrated. Your hemaglobin is a concentration of your red blood so if you are super hydrated the concentration could be diluted. We remembered that the day before Addison had the CBC last week she drank a record amount of fluids so that could account for the low HGB. Well on Sunday Addison barely drank anything and then again Monday morning so her HGB was back up. Crazy how little things like that can affect it in such a huge way! The Dr did say that if Addison continues to improve it will be a slow upward trend that will take probably close to a year or longer before back to normal levels. We are happy to wait and avoid treatment! Just means our life will continue to be a roller coaster for quite some time!
Going to work on getting some pics posted of our little lovebug! Thank you for the continued prayers!
Thursday, August 26, 2010
Declining
It has been 5 weeks and 3 days since Addison's last platelet transfusion. She was holding steady around 50 for her platelets for 4 weeks and her WBC and RBC seemed to be improving. I took her in this morning for her weekly CBC and the counts were not great. Everything seemed to dopped.
WBC 2.1 (3.3 last week)
Neutraphil .7 (1.2 last week)
HGB 9.2 (10.8 last week)
platelets 28 (51 last week)
I am not sure what this means except for the fact that I know it is not nearly as good as it was or we were hoping it be. Charles is trying to keep me positive but my heart breaks looking at these numbers. I do not want to think of Addison having to go back into that hospital and have to be pumped full of drugs that will make her feel terrible. I want God to just FIX her without the use of medicine. Is that too much to ask for? Please pray.
WBC 2.1 (3.3 last week)
Neutraphil .7 (1.2 last week)
HGB 9.2 (10.8 last week)
platelets 28 (51 last week)
I am not sure what this means except for the fact that I know it is not nearly as good as it was or we were hoping it be. Charles is trying to keep me positive but my heart breaks looking at these numbers. I do not want to think of Addison having to go back into that hospital and have to be pumped full of drugs that will make her feel terrible. I want God to just FIX her without the use of medicine. Is that too much to ask for? Please pray.
Thursday, August 19, 2010
Keeping Steady
I will gladly give up a night's sleep to have good CBC results. I am a nervous reck the day before Addison's CBC. I usually don't sleep because I am so nervous the results will be poor. Well....they were not poor! For the 4th week in a row her counts have slowly increased! There is of course the margin of error which can account for the slight increase/decrease but overall her counts have stabilized and some continue to increase! WOHOO!!! I just wish she was completely better and the worrying could stop but any positive news is GREAT news! So we take what we can get.
WBC 3.3 (slightly down from last week 3.5)
Neutraphil 1.2 (1.1 last thursday)
HGB 10.8 (9.8 last week...HUGE increase!)
platelets 51 (50 last week)
Thank you for your continued prayers....they are extremely powerful!
WBC 3.3 (slightly down from last week 3.5)
Neutraphil 1.2 (1.1 last thursday)
HGB 10.8 (9.8 last week...HUGE increase!)
platelets 51 (50 last week)
Thank you for your continued prayers....they are extremely powerful!
Monday, August 16, 2010
Vaction to Reality
We had a wonderful vacation. We definitely needed the week away and Addison enjoyed every minute of it. She was a ham the whole time and showed off for pretty much anyone willing to watch! She fit in with all the kids at the pirate ship pool even if they were twelve! She had absolutely NO fear! She liked the boat but she hated her life jacket so her one ride on the boat was short lived. She was fascinated by the jumping dolphins and the tricks they did and all the fish swimming around the dock. She even got to play at the pool with her friend Katie (from Vero but they just moved to Tampa same time we did and were vacationing in the Keys too).
After what should have been a 6 hour drive but took 8 we were home Wednesday evening. Addison was thrilled to be back in her home surroundings and literally took every toy of hers and piled them in the middle of her playroom. I think she was taking inventory to make sure nothing was missing! So sweet!
Addison started showing signs of petechia on her belly and legs Thursday morning so I had a CBC run at our pediatricians. I wanted to be able to order platelets for first thing Friday morning so that we wouldn't have to spend our entire Friday at the hematologist office. Her counts had risen except for her RBC which actually dropped slightly. Apparently vaca was good for Addy's body. :)
WBC 3.5 (2.9 10 days prior)
Neutraphil 1.1 (1.0 prior)
RBC 9.8 (10.0 prior)
Platelets 50 (48 prior)
We went to the hematologist Friday morning because they had to access the port. It has to be flushed once a month and as hard as it is to believe it has been a month since it was placed and has not needed to be used! They ran a CBC at their office which was nice for me to be able to compare numbers of each machine.
WBC 3.73
Neutraphil 1.11
RBC 9.9
Platelets 46
Her counts were good. I was not happy with the drop in platelets but she has been keeping them steady around 48 for about two weeks which is great. It would be wonderful if they would start to creep up but our Dr. told us that Addison is not out of the woods yet and she wouldn't be surprised if all her counts started to drop again. Her opinion is that they won't but we should mentally prepare for the possibility. UGH! Accessing the port was a miserable experience. I thought it would be better than inserting an IV but I was wrong! It was terrible and it left both Addison and myself in tears. I cried the whole way home. I know life isn't fair but after having a wonderful week away from reality it is hard to come home and face this and watch your daughter have to go through these things none of us understand. We continue to stay positive and pray for a complete recovery and we are so thankful she has improved as much as she has without the use of treatment.
After what should have been a 6 hour drive but took 8 we were home Wednesday evening. Addison was thrilled to be back in her home surroundings and literally took every toy of hers and piled them in the middle of her playroom. I think she was taking inventory to make sure nothing was missing! So sweet!
Addison started showing signs of petechia on her belly and legs Thursday morning so I had a CBC run at our pediatricians. I wanted to be able to order platelets for first thing Friday morning so that we wouldn't have to spend our entire Friday at the hematologist office. Her counts had risen except for her RBC which actually dropped slightly. Apparently vaca was good for Addy's body. :)
WBC 3.5 (2.9 10 days prior)
Neutraphil 1.1 (1.0 prior)
RBC 9.8 (10.0 prior)
Platelets 50 (48 prior)
We went to the hematologist Friday morning because they had to access the port. It has to be flushed once a month and as hard as it is to believe it has been a month since it was placed and has not needed to be used! They ran a CBC at their office which was nice for me to be able to compare numbers of each machine.
WBC 3.73
Neutraphil 1.11
RBC 9.9
Platelets 46
Her counts were good. I was not happy with the drop in platelets but she has been keeping them steady around 48 for about two weeks which is great. It would be wonderful if they would start to creep up but our Dr. told us that Addison is not out of the woods yet and she wouldn't be surprised if all her counts started to drop again. Her opinion is that they won't but we should mentally prepare for the possibility. UGH! Accessing the port was a miserable experience. I thought it would be better than inserting an IV but I was wrong! It was terrible and it left both Addison and myself in tears. I cried the whole way home. I know life isn't fair but after having a wonderful week away from reality it is hard to come home and face this and watch your daughter have to go through these things none of us understand. We continue to stay positive and pray for a complete recovery and we are so thankful she has improved as much as she has without the use of treatment.
Monday, August 9, 2010
Sunday, August 8, 2010
VACATION!!!!!
Addison and I left Vero Thursday morning at 8:30 and it took us about 5 hours to make it to Duck Key by the time we stopped for potty breaks and lunch with Great Aunt Clare (my aunt)! We taught Addison how to say vacation before we left and she could feel the excitement of what was about to come. She was dancing and jumping around the house as giddy as can be! When we got to Hawk's Kay my friend Lauren and her daughter Iannica got in our car to drive up to the front to check in. Addison and Iannica held hands on the way and Addison was beside herself! The picture is above. SO CUTE!
Our Villa was not clean by my standards so we cleaned it from top to bottom just to be safe there weren't any lurking germs hanging around. So far Addison seems to be feeling great and sleeping great. No unusual bruising so things are wonderful!
There is a pool with about a foot and half of water in it and a huge pirate ship with slides. Addison LOVES it. It is so much fun. I posted pictures above. We will keep you posted on more fun times. Addison's friend Katie should be arriving today so we look forward to some pool playdates.
Our Villa was not clean by my standards so we cleaned it from top to bottom just to be safe there weren't any lurking germs hanging around. So far Addison seems to be feeling great and sleeping great. No unusual bruising so things are wonderful!
There is a pool with about a foot and half of water in it and a huge pirate ship with slides. Addison LOVES it. It is so much fun. I posted pictures above. We will keep you posted on more fun times. Addison's friend Katie should be arriving today so we look forward to some pool playdates.
Friday, August 6, 2010
Tuesday, August 3, 2010
The Power of Prayer
First I have to THANK everyone for your continuous prayers. I know Addison has many many prayers being said daily for her recovery and she is on numerous prayer lists around the world (literally). Without these prayers we would not have had the CBC results we did today. Addison's WBC was 2.9 (1.9 Friday) with neutraphils being 1000 (highest they have been since late May), RBC 10.0 (they were 9.3 for past 2 weeks) and her platelets remained unchanged at 48 (this is good that they did not decrease...her body might be leveling out and platelets are the last thing to increase).
Those results are not back into normal range (red blood is in the low range of normal) but they are steadily increasing which is all we want! We pray and pray and pray everyday for them to continue to rise to normal levels so that Addison can go back to enjoying her life like a normal 16 month old can! We are so grateful and now we are on our way to vacation in the Keys! I think we all need a little relaxation and something to get our mind off of everything! Today is 15 days since her last platelets transfusion! Hopefully she will not need another one ever again (except to get surgery to remove her port!) :)
Those results are not back into normal range (red blood is in the low range of normal) but they are steadily increasing which is all we want! We pray and pray and pray everyday for them to continue to rise to normal levels so that Addison can go back to enjoying her life like a normal 16 month old can! We are so grateful and now we are on our way to vacation in the Keys! I think we all need a little relaxation and something to get our mind off of everything! Today is 15 days since her last platelets transfusion! Hopefully she will not need another one ever again (except to get surgery to remove her port!) :)
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